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Formyson2

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Hi! My son just started having seizures the end of July. He was in Haiti on a mission trip. We are still in the process of testing and discovery. So far, no real answers. I am sad, but enlightened to learn that this is common. He has had lab studies, CAT scan and MRI. He had recent labs that are still pending.
Any advice or suggestions are welcomed. I am learning as we walk this new path.
 
Hi Formyson2, welcome to CWE - it's awesome here :)

As you've read, explanations are quite rare with this condition. Unless it's a provable genetic reason, or brain damage from an accident/virus etc most of us don't know why we've got it.

Mine was put down to herpes encephalitis - even though I tested negative for it, and have no visible lesions. It fit the symptoms, so that's it, case closed. Apparently I got the virus from the imported tropical fruit I was buying from the local market.

Tenuous, huh? :P

It's great you've found this place- it's so excellent for advice and support. I've learnt much more about E here than from my neurologists.

It's possible your son's condition has been caused by a virus over there- but the lab work should have picked that up, and there probably would have been other major symptoms like a coma etc.

All I can say to you is try not to worry and stay strong. Hopefully you will get more information from the doctors in time, and it's completely possible that your son's condition can be controlled by the correct meds.

I wish you luck, and urge you to use CWE as a source of info and support- it's been a great help to all of us :)
 
Thanks so much for your support. I am reading and learning! I am trying to stay strong. He gets concerned if he thinks I am worried about him...He's amazing!
 
Hehehe well sons worry about their moms just as much- I know I do :)

That's the other reason for not worrying (I know it's so hard) you don't want to be passing the stress on to your son..

He sounds great, a real trooper. E is a hard condition to come to terms with, but in no way does it have to rule your life. Just stand up and say 'NO' :)
 
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Dan is scheduled for a VEEG in 2 weeks. Is it possible for this test to be "negative" for seizures, too? CAT scan, MRI, EEG and labs have not shown anything that is helpful. He has had about 24 "events" in the past 2 months. It has been difficult to feel "heard" by the medical community. I know my son, and these "events" are not normal for him. If the VEEG is "normal", what should I ask for if the doctor tries to brush me off?


~Nancy~
 
What are his "events" like? What happens or what does he do during them?
 
About 2-3 minutes before the "event" he will say, "I think I'm going to have one because I feel pulling" or "my muscles feel twitchy" or complain of a headache. They start off with a blank stare and he acts like "nobody's home". He has some jaw twisting repetitions, some extension of his fingers, tight clenching of his fingers, chest heaving, back arching, talking- repetitious words or phrases of things he has heard or pieces of things he may be pondering. None have been exactly the same, but every one has most of these elements. The entire duration of the 'event' is 30 minutes to 1.5 hours. Since I don't have a diagnosis yet, I am not sure if they are seizures. I am a RN and have seen seizures, but never anything like this


~Nancy~
 
Hello and welcome. What you describe certainly sounds like a complex partial seizure, except for the duration. Partial seizures usually last 20 or 30 seconds, or maybe a couple of minutes.
As for the tests, many of us here have never found any reason for our epilepsy and we often have no abnormal lab tests. I was diagnosed about 32 years ago and have never had abnormal tests. Earlier this year I had an MRI which showed some brain abnormalities, but the epileptologist thought that they could have been caused by the years of seizures, and were not the cause of the seizures.
Anyhow, best of luck to you and your son. As far as possible, try to be normal with him, OK? Stay around here and vent to us as much as you need.

Onward and upward!
 
Thanks, Arnie. This forum has been amazing. I am wondering if he is having one after another and thats why the total event is so long. We are so new to this that I don't really know very much. But I'm learning! I'm trying to keep life as normal as possible for him. I can't imagine how hard this is for him. He's a guy and doesn't talk about his inner feelings very much.


~Nancy~
 
Many of the things that you said that your son does are the same things that I do during a complex partial.

The ones I seem to do most often during a seizure are stare off into no where, smack my lips, talk but what comes out may not be words or just saying random words over and over. I've gotten up and walked around, picked up things and 'played' with them. There's a long list. I don't remember anything at all that I did during them and I usually don't even know that I've had the seizure unless there is someone there to tell me I've had it.

Before a complex partial I might have a simple complex. During these I'll feel dizzy, things won't look right, my lips will tingle and I'll be confused. Sometimes however I just go right into the complex with no warning.

A seizure itself for me will last usually 5 to 10 minutes. It will take a little longer after that before I'm completely out of it though. I won't be 'blacked out' any more but I'll be confused about who people are, where I am other things that I should be able to know right away.

A good bit of times after a complex seizure I will have a headache that could last for hours.

Everyone is different with the things that they do during a seizure and how long they last. Make sure you can give the dr as much information as you can about both.

Do you think you could try to have him join CWE? It might be easier for him to talk with other people who are going through the same things that he is than it would be for him to talk to with his mom. He can make up his own name and not tell you what it is so he wouldn't have to worry that it could be him that you are reading the things he is posting.
 
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Formyson2 said:
Thanks, Arnie. This forum has been amazing. I am wondering if he is having one after another and thats why the total event is so long. We are so new to this that I don't really know very much. But I'm learning! I'm trying to keep life as normal as possible for him. I can't imagine how hard this is for him. He's a guy and doesn't talk about his inner feelings very much.
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I'm not sure why, but my epilepsy has never bothered me nearly as much as it bothers my wife, even in the very beginning. I really think that sometimes it's more scary for the people who watch than the people who are having them.
I agree that it might be good if your son wanted to be here, too.

Cheers!
 
I will encourage him to join CWE. I think that is a good plan. It is all so confusing and unclear right now. Does it help to have a diagnosis?


~Nancy~
 
On here there is probably a good chance that there is someone else who is dealing with the same issues that he is. It will help him know that he's not the only person who is out there that is having these problems. He could find out what people do when things happen.

He would be able to find out what types of medicines that they are on and any tests they have had. He can talk to people about what happens when the tests are done and if he would be put on medication then he can ask people about the side effects of them.

It's easier to talk about things to people who have epilepsy about what your seizures are like. We could understand what he means in one sentence but when you try to tell someone who doesn't have epilepsy it could take forever to try to explain it and they still don't know what you mean.

I'm not going to say that he's going to be able to find a diagnosis just by being on the website but it might help some.
 
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